Saturday, August 13, 2011

And I thought the G-Tube was going to make life easier.

Not exactly the case.
I also made a statement that using a bottle with Raquel was basic cruelty, due to how much damage is done to her mouth.
After a few days of feeding her from a little bag attached to a pump, I'll reconsider.
It takes 20 minutes to feed her with a bottle.
Start to end with the g-tube (that's cleaning the bags etc) it's an hour.
30 minutes to run the machine, a few to prime then lots to clean.
So far Gabi is doing the cleaning job, but at 2am it's lots of work.

Then there is keeping up to what the nurse says with her feeds.
Up till now we've been feeding her when she's hungry.  Easy.
But she's supposed to be getting said amount of calories to gain weight etc.
Of course it will change with many factors, but first we had to figure out how much she'd take.

Renata on our first night home couldn't sleep because she was worried she'd puke and choke and that would be it.  So fear kept her on the couch all night with one eye open.
For me that night was as peaceful as when Simona was at hospital looking after Raquel.
I didn't hear a peep.
I was shocked to hear it went so bad.
Friday morning I gave her the set amount and filled her past full.
She puked it out. 
Well then, the G-tube company needs a auto stop feature like with gas pumps.
I'm sure there could be, except if the kid has got gas to begin with, I'd expect you'd not be able to feed them at all.  Too much back pressure.


On Thursday we started to notice some more discharge around the area of the G-Tube.
First it was clear.
Yesterday it was yellow and almost foamy around the mepilex.  With that yeasty smell of her foot when it's been raw for an extended period of time.
We made a late night call to the Surgeon on call.
Raquel the whole time was in excellent shape.  Happy, playing and not too much fuss.
We didn't get a return call that night for what ever reason.  Which was fine as Raquel only woke up twice and wasn't much problem.
We fed her from the bottle and it was fine.

In the morning there was a large ring of wet discharge around the area.  We made the call again and finally got through.  The word was to watch her.
We watched for the rest of day.  She'd have the odd hot flash and she'd be sweaty, but would go away quickly.
This evening, moments before I was leaving with Gabi, my brother and buddy for the free Lions game we got tickets to in the hospital (which was worst game I've seen ever) we notice that the discharge around the G-tube was brown.  YIKES!!!

Phone call back to Hospital.
Raquel has a 8:30 am appointment, Dr. said it would be a better option than standing in ER for hours this evening...
Even with Raquel's current VIP wait.
I can confirm it's not bowel back up.  She's pooping like crazy.

Oh did I say that I had her on a trampoline bouncing shortly before we noticed the brown?  She was having so much fun and was pointing to it with Cordelia Gabi and I playing that she had to join the fun.
On a lighter note.
Cordelia was jumping around into the pool at this same party.
It seemed boring to me that she'd just stand at the side of the pool and jump in.  So I asked if she wanted to do a flip in?  It took a few minutes to convince her it was a fun idea.
It took just as long to get her to stop crying due to all the water that went up her nose after she landed a decent full flip lost hold of her nose and felt the pressure behind her eyes as the water slammed up her nose.  Good thing she nixed going off the diving board with my help.  She'd probably further over rotated and done a face plant.


2 comments:

  1. my son can not tolerate pump feeds. we feed him by gravity. we can run 3-4 oz within minutes and he does just fine vs the 3-4 oz over 30 minutes and he'd throw it all back up. even in the middle of the night, when he wakes up we let him drink by bottle and whatever he doesn't finish we gravity feed through his tube. with gravity feed you can tell when the stomach is full, no more formula will go down the tube. it takes awhile to get a good feeding schedule. joey couldn't tolerate the schedule the doctor gave us in the hospital, so we figured out our own and he is doing well.

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  2. Thank you Sara.
    We'll try that too.
    The pump has worked for the most part.
    Just time consuming at times when we're still half asleep.
    R

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